28 December 2014

A couple of weeks ago, I went to a little online Christmas party in the Blog with Pip Facebook group. I wore my pyjamas and drank a glass of wine. Pip very cleverly got the discussion happening by asking us all some questions about what we did in 2014. It was wonderful to see how confidence, friendship and skills have been built. Everyone in that course is so supportive, encouraging and congratulatory. And at the end of the party, Pip said that now we've answered the questions at the party, we might like to share our reflections on our blogs.

I know I've just done a recap post, but I liked recalling the year that was this way because it got me thinking about what I want to do next, and reminded me of all the people whose blogs I've read through the year. I've linked to the bloggers' Facebook pages, please pop over and say hello! (Also, while I am on holidays and not blogging as much, I'm sharing lots of pictures on Instagram. Come say hello!Question OneWho are some people who inspired you in 2014? 1) Stella Young, as she changed the world. 2) Pip Lincolne because she does heaps of amazing, creative, inclusive things. 3) my friend Camille from CurlyPops blog because this year she has packed so much into her life after her double lung transplant last year. 4) all of you bloggers, new and experienced, because you are brave enough to put yourself out there.Question TwoWhich blogs have you discovered or continued to enjoy this year?Sarah's Heart Writes and I Give You The Verbs and Mama Nourish and Edenland and The Chronic Ills of Rach and Life At My Level and Living With Bob (Dysautonomia) and Carly-Jay Metcalfe From the top of my lungs: living with Cystic Fibrosis and MeetMe AtMikes and Stream of CaitlinnessQuestion ThreeDid you achieve something this year that surprised you? (In any area of your life?) Care to share? A few things are fine too! Go you!I got engaged! That surprised me! And I was named in Australia's 100 Women of Influence - another great surprise. The biggest surprise growth I guess is that I walked out of a toxic situation and created a better one for myself.Question FourShare some things you tried for the first time?!Living with another person. Geez. The arguments we have over the housework! But it's also wonderful and he's there when I wake up and when I go to sleep. Also, I know how to use Photoshop because of my day job - I used that properly for the first time. Only basics, but I can do it! And I used Canva! I made this!

Question FiveWhat was the best thing you saw or heard?Darren Hayes' voice at the end of my phone line. Hands down. I GOT TO TALK TO HIM ON THE PHONE!!!!!!!!!!!!!Also, I loved watching Gone Girl even though it was gory. And I loved reading The Fault in Our Stars. I loved Lorde's album. And I loved seeing photos of Adam hanging out with my Dad making model trains when I was overseas. Question SixName 3 things you didn’t get to do this year that you want to tackle next year?Redesign my blog. Create an ebook/course. Start my memoir manuscript. Question SevenIf you could steal ONE QUALITY from another person, what and who would it be?I’d steal Pip’s quality of getting up earlier - to exercise, to write more...Question EightWhich bit of YOURSELF were you most proud of this year?
My writing, my confidence and my ability to never compromise who I am. I declined an award because it would have been unethical to accept it. I don't know if any of the other winners did, but I am glad I did.Question NineWhich skill do you most want to improve/acquire next year?I want to get skills to improve the visual bits of my blog, and make time to write other stuff.Question TENBest thing about this year? Most looked forward to thing about NEXT year?This year has been amazing! engagement, travel, heaps of speaking opportunities, awards, great friends, great day job. next year I am looking forward to wedding planning and broadening my own business.

Maybe you want to do the quiz too?! Feel free to do it in the comments, or in a blog post of your own! Hope you're having a good holiday!

23 December 2014

I write this with a heavy heart, and also a sense of relief and huge accomplishment. And a huge smile.

I finished my day job for the year this afternoon. No more work until 5 January - and boy do I need the break. But I finished my day job this afternoon - my dream job, for now. I couldn’t leave without crying - again. I will miss them.

I left with a clear vision of what I want to do with my writing, speaking and appearance activism. And that’s comforting given the unknown of my day job that I commence next year. I am someone who needs certainty. And I am also someone who needs to make my own destiny. So I will. I have a blogging course to create, plus a meet up for Ichthyosis patients and families to organise. And that is just the beginning.

I’ve been reflecting on all the things I’ve done this year. It’s been huge. Busy. Twitter's asked us to describe 2014 in five words. Best year of my life. I’ve achieved so much, found my place in this world, have amazing friends around me, and have the love from a man who is one in a million. I have also taken 27 plane trips.

It hasn’t been without its challenges though - I’ve lost friends through broken friendships and death, walked away from a tough situation and been privy to thoughts and assumptions about me that I never thought I’d hear. I’ve also been extremely sore most months and put on a little weight because I haven’t been able to go to the gym. Still, happiness has triumphed.

Thank you to everyone who has helped me along the way - who has read my writing, sent me an email, commissioned me to write, booked me to speak, written me a reference, acknowledged me for an award, sought my advice and experience paid me and thanked me. Thank you.

Here’s what’s happened this year. Can I just add - I did ALL of this on top of my full time job.

January

January was hot. I can’t recall too much more, but I know it was hot. I was interviewed by SBS’s The Feed about the Reddit experience. You can watch that here.

February

In February, I was chosen in the Guardian's Diverse Writers program - where 15 or so writers from diverse backgrounds met with editors from The Guardian to work on pitching. If I am honest, I don’t know whether I accomplished a lot with my paid writing since, but I did have this article about Reddit published on The Guardian shortly after.

I ate a lot. Especially in Europe. And I went to the Louvre and Disneyland. I feel like I have lots more from my trip to write about.

I also wrote a story about our engagement for New Idea magazine - I wrote this in third person, in the plane at around 6.00 am from San Fran to Chicago.

While in Paris, I woke up to the news that I was a finalist in the Australian Writers Centre’s Best Blogs competition yet again. Again, a lovely honour.

May

I spent half of May in the UK - staying with friends, family and in hotels and hostels. I loved Scotland the most. I got really sick and a bit homesick, and by the end of it, I was glad to get home.

May was Ichthyosis Awareness Month - and I shared 39 stories from people affected by the condition on my blog. So proud and privileged to be able to do this - and especially so thankful for people trusting me to share their stories. Though it was super busy with travelling and editing and scheduling the posts plus the social media while I was traveling. I spent so much time working on my blog in my hotel in Milan in late April that the concierge felt sorry for me not seeing the sites and gave me the internet for free!

When I returned from overseas, Adam moved in! That’s been a big adjustment for both of us, but it’s been most wonderful to have each other.

I met Ariana Huffington (disappointed she doesn’t pay bloggers) and also some lovely women at the Business Chicks event, including Helen Kapalos from Channel Seven, and another wonderful woman who gave me flowers in the street.

22 December 2014

Since being with Adam, I've come to see what it means when someone truly embraces my skin condition and my appearance. He doesn't look past or love me in spite of the way I look. He doesn't accept or tolerate - those terms are condescending and suggest someone has to accommodate a disability. He loves me. He loves all of me, and all that I leave behind. Adam calls me his flaky strudel. He once told me that he finds pieces of my skin in his pockets, allowing him to carry me with him. He looks at me adoringly, with whatever face I've got on. In the morning, his beautiful face beams at my just woken up face - taut with yesterday's skin. I'm feeling my least beautiful and he looks at me like I'm a supermodel. When my new face is on and I'm feeling good about myself, he'll say, "you've got something on your face. It's beautiful." And my heart melts. Every time. I imagine it would be such a lot to get used to - dating then living with someone who sheds so much skin, whose skin is a combination of dry and oily all at once and who’s always feeling some element of pain. I admit to being high maintenance - merely because of my skin, which is out of my control. This high maintenance usually involves me being too hot or cold or itchy or sore. But Adam has stepped up - feeling my body for a temperature (or just a chance to cop a feel!), pulling skin from my hair or ears, and never complaining how much of my skin and cream ends up on him. He’s here for me in sickness and in health. Ichthyosis causes incredible self consciousness in the patient, and it seems intrusive for those around us. I say that with absolutely no apology, though. (More about that in a future piece from me.)I was reading a blog post by a blogger called Mom of 4 is Tired on the weekend. I immediately sent this passage to Adam, saying that the blogger could have written this about our relationship.

"Who is telling you that your body isn’t the ideal?

Only people who don’t really matter. Only people you don’t know. Only that same voice in your ear that is telling you you ‘re not a good enough mom or worthy of a raise or shouldn’t go back to school or wear that dress. Are they invested in you? Are they worth believing?

Who is telling me, telling you that your body is exactly right?

Only the man who lays down to sleep with you every night. Only the one person who sees you naked every day and would throw down whatever he is doing to meet you ANYWHERE, ANYTIME for a quickie."

This passage resonated with me so much. A year and a half ago, I'd have resigned myself to a life of singledom, that I'd never experience this true love. Now, I am so lucky. Adam wants to touch me when I feel least desirable. He looks at me in wonder - no matter how I look. He holds my hand proudly, wherever we are. He's never made me feel like I have to apologise for being me. What a privilege that is - though it should be the norm. I don't think happiness and the pinnacle of disability is finding a partner. And I say that even when I have - because I lived independently for so long. I developed the strength to love myself on my own, and I never thought I'd need a man to affirm my beauty. But the way Adam sees me is so powerful - for me, and for everyone who doesn't see what he sees.We set our wedding date on the weekend - 20 March 2016 in Melbourne. Such a happy moment for us, and such a happy time we have to plan. Gosh I love him.

20 December 2014

I'm exhausted. The kind of exhaustion that comes with sadness and busyness. Adam is doing his very best to make me laugh, with funny dancing, but truth is, I just want to do nothing.

It's been a hard month. So much grown up stuff to deal with. The tragedies this week - in Sydney, Pakistan and Cairns especially - are too evil to comprehend. I can't fathom the loss of life. What the world needs now is love - and I think we've all seen an abundance of kindness come after world and personal tragedies.

I am glad I had a little break at my parents' from Sunday to Tuesday. The Christmas break starts for Adam and I this Tuesday afternoon and we cannot wait. If I haven't sent your parcel, read your blog, replied to your tweet, caught up with you in person or bought you a spectacular Christmas present - I'm sorry. It's just too much for me right now. I need to rest - emotionally and physically.

Yesterday I said goodbye to Stella Young at her public memorial. It was beautiful, and sad. It was nice to be with friends, crying, laughing, mourning together. The solidarity in the disability community is so strong. Since Stella's death, I've read and heard so much about her ideologies - and I have so much to write and do.

I also said goodbye to my day job team - sadly I'm not returning there next year. Devastated. It's been a pleasure to work there and I will miss the team and the work so much. There were too many goodbyes yesterday. It was so hard.

I wrote this next bit after Stella's memorial - and I promise you will see me put it in action soon. Because, now more than ever, we need to keep up the activism. As Stella's good friend Nelly Thomas said in her tribute, "If you really want to honour Stella's legacy today you won't eulogise her endlessly, you'll do something about it."

I pledge to continue the legacy of Stella Young's work, education and plans for equality in Australia and the world.

We must all champion change in attitudes, accessibility and inclusion - for all members of the community.

17 December 2014

Yesterday I went to my high school where I delivered a speech and was inducted onto the wall of honour. I never liked school. I liked the learning part, but I hated the exclusion. And so I talked to the students (and their parents and the teachers) about this, and what they can do to include their peers. I really wished those who gave me a hard time could have been there to hear it too. Maybe they'll read this. My parents and a friend came to watch, and I had some friends in the audience - teachers, parents and people I went to school with.

(Being presented by school principal Richard Schell)

When I arrived, I felt a little nervous, because those memories of school have stuck. But it was so good to see the teachers 15 years on. I commented to one teacher that I had never seen her wearing anything other than her sports gear - today she looked fabulous in a sleek dress! She told me she's grown up too! Another teacher told me that I look exactly the same as when I left high school. I know. And then I got to watch the young people receive their awards - all so smart and accomplished (and there were subjects spoken of that I want to do! Sweet endings (cooking) and paddock to plate (food growing) sound right up my alley.

I gave the speech - started off nervously, but then it was exhilarating. And I am so glad I did it. Richard, the school principal, left me this message last night:

Carly,

"Your speech was truly inspiring, I know that certain members of staff had tears in their eyes and I know that many students will have been affected in the most positive way by your wise words and quotes.

Many thanks,

Richard Schell"

Someone else in the audience said:

"Hi Carly, I was lucky enough to hear you speak today. It was a truly wonderful speech and I wish someone had given me the same one back when I was at school. I'm sure it made an impact on the students that were listening today."

A special thanks to Mr Woodman, Ms Valeri and Ms Coombes for organising my induction.

(with Mr Schell and Mr Woodman)

Here's my speech.

Thank you for having me speak today, and also thank you for inducting me in the Murray High School wall of honour - it's really lovely. I must be the least sporty person in it.

Firstly, a big congratulations to all the award winners today. You're all so hard working and accomplished for your short lives.

Like you young people probably do, I find meaning in song lyrics. I’m going to use some of them in my speech - I hope you will relate, despite the vintage of some of the songs.

I’ll start with Lady Gaga. She sang: "I'm on the right track, baby, I was born this way, Don't hide yourself in regret, Just love yourself and you're set." These lyrics set the tone for this talk.

Yes, I was born this way. I was born with a rare, severe genetic skin condition called Ichthyosis. 20 people per million have the condition and there's over 20 variations - I've got one of the severe types. It means scaly red skin. The doctors didn’t think I would live this long.

And like Gaga, I also love myself - not in the up myself way - but in an "I’m proud of who I am" way, despite what others expect.

My condition means that my skin is inflamed, scaly, itchy and sore. It affects my eyes, ears, metabolism and temperature regulation. Every day - twice a day - I cover my whole body with a cream that's similar to Vaseline. Sometimes I get so sore I need to go into the hospital for intravenous antibiotics and to be bandaged up like an Egyptian mummy. But like anything, there are upsides, one of which is that my skin renews itself so quickly I look like I’ve just finished high school. Most of the time it’s pretty good - but I always look red (that varies from chipolata sausage red to fire engine red) and there’s always an element of pain.

The next lyric is from a band I listened a lot to when I was at school. Savage Garden. Many of you weren’t born when they were at their peak, but I loved them and still listen to them now. I knew their lyrics off by heart during my HSC, but wasn't really good at maths.

The lyric goes: "I wonder if you know the pain to want the one thing that you haven’t got?" I experienced the pain of wanting friendship for a long time.

When I was at school, I had very few friends. There were a few people I called friends, but only one that I hung out with after school for about three years. I hardly went to any parties.

People are afraid of the different especially when they’re egged on by their mates to make fun of and exclude the different. I just wanted to look normal, to fit in.

Most of my lunchtimes were spent in the library, alone. When the library wasn’t open, I’d hang around the school office. I was called names but the isolation was the worst. I can’t imagine getting up on stage making this speech when I went to school - I’d be afraid no one would clap or they’d snigger and whisper amongst themselves. So thank you for giving me the time today.

Even now people stare and comment and can’t get past the way I look. I can see their minds tick over when they see me, they stop what they’re saying when they see me, wondering how I got so sunburnt. Sometimes they laugh, other times they comment on my appearance - to their friends or to me directly. I’ve been prayed for, offered all sorts of cures (there is no cure) and told how ugly I look. Teenagers have taken photos of me on their phones, probably sharing them with their friends on social media. It is tiring, but then it’s also a way to meet really interesting and lovely people. For every awful person I meet, I encounter at least 10 wonderful ones. And I get recognised a lot, even by celebrities.

Fortunately I found my tribe. I found it outside of school - when I started working at Kmart in year 12, and then when I went to university and when I moved to Melbourne, in the blogging and disability community. I finally have real friends! So many that I’m finding it hard to narrow down my wedding invites! And many of those friends are different in some way - like me. It’s wonderful.

There was no one like me at me at school. No one else looked different, no one that I knew of had a disability. I didn’t even identify with having a disability - I thought it was a negative thing.

I know there are young people in this assembly today feeling like I did. Alone, different, like things will never get better. You might not have a skin condition but you might have a learning disability or a physical disability. You might be a different size or shape to what you think is normal. You might identify as a lesbian, gay, bi, trans or intersex. You might follow a different faith to your friends. Or you might come from a diverse cultural background.

I want you to know that there’s no such thing as normal. Normal is just a setting on the washing machine. I want you to know that you that are not alone, and that if things are hard in school, there is a big world outside of school with many opportunities for you to find your tribe too. There are people out there who will get you, will share the same interests as you, and will love spending time with you. It gets better.

U2, a band probably before your time, but they tried to get into your iPhones recently, has a song called Stuck in a Moment. The song goes: "You've got yourself stuck in a moment. And you can't get out of it."

I reiterate, you aren’t alone, and there is help. If you find yourself stuck in a moment, reach out to a trusted family member or older friend, talk to a teacher you get along well with, or call the kids helpline.

And teachers, please act when a student comes to you feeling like they’re stuck in a moment. You might be one of the only people they can turn to at school.

So, with the all medical and social challenges I've had, and looking really different to most people, how have I come to love myself? It took a while, but I came to realise I will never look like most people do. And that’s ok.

And, I believe this too. I gave up on reading trashy magazines long ago. I stopped comparing myself to the models in magazines, to the women I saw in the street, and started to believe in myself. I got to love fashion and take pride in how I looked, And I began create my own media - with a blog that now gets 70,000 views a month, I can tell my story in my own way - without the exploitation and sensationalism that you often see in stories about disabilities and rare illnesses in the media. If you’re feeling bad about the way you look, stop reading those magazines which place unrealistic body image pressures on us. You are not them, you are you. And kindness is more important than how you look.

So, Katy Perry sung in Roar: "I went from zero, to my own hero".

I challenge you to be your own heroes too. In recent years, I’ve made my own path to be my own hero. I’ve made a difference that I am proud of.

Last year I was abused by a taxi driver, he told me my face would ruin his cab, and that I smell. I got out of the car, and into another cab, and then I tweeted the event - to my 5000 followers. I blogged about what happened, urging for better training for taxi drivers - to show them that disabilities are diverse. I lodged three official complaints - to the taxi company, the taxi commission and the Australian Human Rights Commission. I called on blog readers to participate in a training program for the taxi company, and they came, they told their stories of discrimination. And now a video has been made for Victorian taxi drivers, featuring my friends and my stories. And I hope less people with disabilities experience discrimination from taxi drivers because of what I experienced and my decision to speak up.

A year ago this week, my photo was misused on Reddit. I woke up to find 3000 hits to my blog, and found that they all came from Reddit. My photo was front page - with 300 comments ridiculing, dissecting and misdiagnosing my appearance. These keyboard warriors were sitting at their computers, making fun of a stranger on the internet. It was hateful. You know what I did? I didn’t cry. I posted a calm, informative response to the haters. I confirmed my identity, told them about Ichthyosis and what it means for me, told them about the great life I lead and directed them to my blog.

I’m pretty sure Taylor Swift wrote Shake It Off about me!

I blogged about it of course. And the next morning, I woke up to requests from News Limited, Mamamia and even CNN in America to share my story with them. My blog received 70,000 hits in two days. I went viral, international. The highlight - Charlie Pickering telling Australia about my writing skills that night on The Project. I took control of that bad situation, and turned the negative conversation around. Those 300 comments turned into over 500, most in support of me. I feared that my photo would one day be misused. My fear came true and I smashed it. I don’t advise that you take on keyboard warriors, especially without emotional support from people you trust and who know social media, but I do hope you can be your own hero and make a difference in your own worlds.

Be your own hero by being a leader. That’s my challenge to you when you leave this assembly, and for the rest of your life.

If you see people being mean to others, in person or online, call them out on their bad behaviour.

Don't make fun of the way someone looks by posting a photo of them or commenting on a photo of them on the Internet. They may be watching. They will be hurt.

Don’t ridicule or exclude people who look different.

Include the people who are excluded. Welcome them into your lives, get to know them. Sometimes the best friends you make are those who are different to you.

Never be embarrassed to be seen with someone who looks different.

And if you are the person doing the bullying, stop.

When I left school 15 years ago, I never imagined I’d be living this great life. I never thought I’d fit in. I never thought I’d be a published writer in the publications that I read. I never thought I’d get to speak in Australia and overseas. And I never thought I’d be engaged to my wonderful Adam. Most of all, I never thought I’d be using my appearance - the thing I most wanted to change to fit in when I was in highschool - to my advantage.

And you can too. This is my final quote from Darren Hayes - that singer from Savage Garden. I have been a fan of his for so long, and now he reads my blog! I talked to him on his podcast earlier this year where he said to me and his listeners - "what sets you apart makes you a target, and what sets you apart unique." Such true words.

Be proud of your uniqueness. Love yourself. Be proud of who you are. Use social media for good. Look out for and include others. Be your own hero. And congratulations on all of your hard work this year and beyond. Thank you.

15 December 2014

A seven month old baby with Ichthyosis passed away last weekend. Such a terrible tragedy. My thoughts are with his family and the Ichthyosis community. Rest in peace little one.

This tragedy is a reminder that skin conditions are not just cosmetic. Many people think that a skin condition affects appearance only, and that its limited to small parts of the body, and that it will clear with diet and lifestyle change. But for people with Ichthyosis or other serious skin conditions, skin can become painful and affect other parts of the body when the skin is inflamed or infected.

The skin is a vital organ - healthy skin serves as temperature control and a barrier to infection. A skin infection can transfer to the blood stream - I've been reminded of that when I've been sick in hospital. (And when I've gone to Emergency with extremely sore skin, there's always some confusion with the triage nurse about how how severe it is, because it's skin.)

It's important that people with Ichthyosis maintain their self care to prevent and treat infections - the shower/bath routine, application of cream and antibiotics, and hospital treatment, plus limiting contact with those who have communicable illnesses.

Never take the skin for granted, and never assume a skin condition is just cosmetic. It's such an important organ for survival.

12 December 2014

This week. It's been tough. But it's been good to laugh and spend time with friends. Today I am popping out on my lunch break to record a quick tribute to Stella Young for Channel 31, and tonight the Quippings crew are performing. Reflective. A colleague gave me these flowers on my birthday - so pretty.

I feel so lucky to be surrounded by such good, kind people. On Monday night some friends came out to celebrate my birthday. I left for dinner feeling sad, and I know others did too. During the night, we talked about serious stuff, but we also laughed (and ate) until our tummies hurt. All of my friends have become friends with each other - it is lovely to see. Adamand I confirmed our celebrant and cake maker during dinner. These nights are the times to treasure. I feel very loved. Thank you for all of your wonderful messages on social media and through this blog.Here are some photos.

Can everyone just LOOK at this cake? Amazing! Jason (who blogs at Don't Boil the Sauce) made it for me! And we've commissioned him to make our wedding cake! It was two tiered with chocolate on the bottom and lemon on the top, covered with raspberries and gold leaf. Beautiful!

10 December 2014

I wrote this tribute for Writers Victoria. My thoughts are with Stella's family and close friends. Her death has impacted the disability community immensely. I have had a few days to collect my thoughts, but 1000 words just aren't enough to express what Stella did for disability advocacy. We need intelligent, relevant, humorous and topical disability media and discourse to continue. It's up to all of us to ensure that.

I found out about Stella’s death just after 10.00 am on Monday - my birthday. I called out to my colleagues "Stella Young has died." As a colleague consoled me, I told her what a great year Stella has had - won best newcomer at the Melbourne International Comedy Festival, gave a TedX talk, caught the attention of Amy Poehler, travelled overseas to talk disability, performed at the Fringe Festival - and talked about all the things she was due to do. In that moment, I realised just how much she packed into her year - into her life. She can’t be dead, I thought. She’s still got so much more to do

But she is - and it seems she’s touched most people I know. Death in the age of social media is a difficult thing. It's overwhelming - with love and with sadness - to see so many tributes flow for a friend, a public person, a leader and a spokesperson. My social media feeds - both personal and work-related - are filled with collective grief and memories

And it’s beautiful. The tributes to Stella have come in from such a diverse range of people - comedians, writers, politicians, the disability community and the able-bods. Her sharp mind and quick wit has seen her take disability issues mainstream. And she didn’t sugar coat it - she spoke about real issues that people with disabilities face, not the "inspiration porn" that she despised.

In the past year, I’ve read pieces from her on the murder of people with disability, disability simulation, work and wages, Oscar Pistorious, euthanasia and dying with dignity, Yooralla, and her journey to rainbow paddle pop hair. She made us think. She created change.

I first saw Stella on No Limits, 10 years ago now. I loved her outspokenness and think I even wrote her some fan mail. I later went on to present on the same show. The next time we were in contact was in 2010 - she invited me to write for ABC Ramp Up, just before she took up the role as editor. I wrote three pieces for Ramp Up and am so thankful she gave me a chance to write for my beloved broadcaster - the ABC. Ramp Up was an integral part of Australian media, giving people with disability an amplified voice - and a small income.

While Stella and I have different disabilities, we share the common bond of having a visible difference and the gobsmackingly rude comments from gawkers. In our first email exchange, she told me "When I first started at the Museum I had a lady approach me and say "It's a pity they couldn't have done something to make you look a bit more normal" and then just walk off. It's pretty unbelievable". I so related.

Stella nailed every single article she wrote. It’s not often that I can say that about a writer. I hung on to every word. Our shared experiences gave us a similar perspective. She wrote a lot about the intrusiveness of strangers’ questions about disability. When many people tell me I should expect the intrusiveness of questions and comments, Stella’s stories about these experiences validated that I - that we - don’t have to put up with this. I shared Stella’s anecdotes with others, reminding them that people don’t have to know why we look the way we do.

Stella wrote: "It doesn't matter how we got like this. Really. Are you asking because you want to know or because you need to? If you're just sitting next to one of us on the train, or taking our order at a cafe, you don't actually need to know. If we've actually met and had a conversation beyond "Do you want honey with your chai?" then perhaps it gets a little more relevant. It might come up in conversation, and when it does, we'll be happy to tell you. It's just not a very good opening line."

Stella taught the world that it is ok to identify with having a disability, that we can be proud. She unapologetically demanded equality and accessibility for herself and the entire disability community. In her letter to her 80 year old self (which I had the privilege of seeing her perform at Women of Letters) she wrote: "By the time I get to you, I'll have written things that change the way people think about disability. I'll have been part of a strong, beautiful, proud movement of disabled people in Australia. I'll have said and written things that pissed people off, disabled and non-disabled people. You will never, ever stop challenging the things you think are unfair."

She also showed us that comedy is a leveller, and that most encounters with a stupid person can be turned into writing fodder or a comedy skit. She educated the masses about disability through her humour - recalling experiences of discrimination and rudeness that made audiences gasp and laugh, and think about their own attitudes and behaviour towards disability.

The last time I saw Stella Young was in October, when we performed at the Melbourne Fringe Festival together. She was hilarious, talking about the time she fell into carrots at Coles, and making me blush with stories of her Mum's knowledge of sexual positions. She grabbed my hand before I walked on stage, wishing me luck. After the show, we went out for a drink - she gave me some advice for writing my memoir, as she was in the process of writing hers. (I hope we can read what she has written one day.)

Stella introduced herself to my Mum, and Mum was chuffed she finally got to meet Stella (she talked about it for days, even confirming their friendship on Facebook). The first thing she said to my Mum was "you must be so proud of Carly". I am honoured that one of my mentors - a leader I admire - spoke so fondly of me. And I was so pleased that my Mum was able to have a wine and a chat with one of the other most influential women in my life.

Stella, my mentor, my editor and my friend, you changed the world. I am so proud of you. Shine brightly. Thank you for giving us permission to be proud of our bodies, for encouraging us to speak up about injustices and for showing us that we can laugh at our own disability quirks. Thank you for all you’ve done.

08 December 2014

It's my birthday today! Yay! I'm 33. I never work on my birthday but this year I'm going to work for my birthday because I've had a few days off lately. I joked that working on my birthday is my present to the team. And then I'm off for dinner. I bought myself a MacBook Air - I'm so proud to have become good with money - I bought this outright using some prize money from this blog. Here's a cheesy birthday themed photo - a boudoir photo as Adam called it.

32 really was a great year! Maybe the best. I started work in an amazing communications role and team, spoke at many events and participated in The Guardian's diverse writers program. I've lost a few friends but gained many more. I went overseas for six and a half weeks - saw eight countries and met some wonderful people. I bought a new car and a MacBook. I talked to Darren Hayes on his podcast. I was named as one of Australia's most influential women. And most importantly, I got engaged to the most caring, loving man - and bought my wedding dress.

I can't wait to see what 33 has in store.

Next Tuesday my blog turns five! Here's my first post. And here's five of my favourite posts over the years.

I love blogging. I love starting out with a blank screen and making something nice for you to read. I love moving people with words - making them think and laugh and sometimes cry. It's an utter privilege to have people read my writing, and to continue to do so, and to leave comments. Thank you. And I love the connectedness - meeting people online and in real life that have become close friends.

I've grown so much. I've come to know myself through my writing, and through the relationships I've made with others. My blog started off as a diary, and then I became focused on appearance activism and Ichthyosis awareness. I was single when I started, and now I've got this amazing fiancé. I graduated from my Masters degree and gone on to work in a communications role in my day job - my dream role. I wanted to be published in the media, and now I have a great freelancing writing and speaking career that I created because of this blog. I made it happen. I've got an amazing readership and communities on Facebook, Twitter and Instagram - I love seeing these communities grow and become more engaged.

To celebrate my birthday and my blog turning five, I have an enormous giveaway for you! Because it's you - my readers - who have been with me, supported me and helped me achieve things I'd only dreamed of. Thank you. And the best kind of presents are those you give others, right? And all the goodies are very me - I love cooking, eating and handmade!

This post hasn't been sponsored - there are no affiliate links and I haven't been paid to write this. I disclose that I was given a some items to keep - some kitchenware from House, clothes from St Frock, a Summerlandish book and a bracelet from The Jewel Collective. I have met many amazing people through blogging and many of them are creative business types who I approached for the giveaway. They have been very generous. Please stop by their sites and say hello!

Tell me what you've enjoyed most about my blog, and what prize you'd like to win. (Competition details below.)

Brunch with me!

Three blog readers are invited to have brunch with me (paid for by me) at a cool cafe in Melbourne in the new year. I love meeting readers in person - though most of the time it's in passing that we never get to chat properly. Brunch is my favourite meal and I'd love to have your company one day soon. You'd have to be in Melbourne or get yourself to Melbourne for this one! I can't pay for your airfare I'm sorry!

Bowls and necklace from Misskelly Made in Tasmania

Miss Kelly Made in Tasmania makes gorgeous bright vessels and jewellery. I'm giving away a set of three faceted bowls and a round necklace.

My friendship with Jason started out when I found his recipe for slow cooked baked beans. Seriously amazing. We chat a lot on Twitter. We've gone out for laughter filled lunches and dinners many times since - most recently to Maha where we met Shane Delia.

Jason has generously donated this prize pack.

He says:

"No birthday is complete without cake so this prize pack will have you well

I LOVE candles but Adam thinks I have too many. I bought a couple of candles from Melbourne crafters Aacute at recent markets - a lemon friand and a chocolate brownie. These smell like the real thing. I also bought some earrings as a gift for a loved one.

The lovely ladies from Aacute are giving away a jam donut candle and a pair of drop earrings. The winner can choose any colour combination of earrings.

Pip Lincolne is a blogging crafting creative goddess and I LOVE HER! I did her Blog with Pip e-course this year - it's designed for new bloggers and crafty types - but I got so much out of it - design, writing prompts and most wonderfully, a great community. I love connecting with them in the Facebook group and meeting up with them at real life events.

Pip is giving away one place in her course, plus some vintage goodies. You'll get so much out of this e-course.

Sometimes I go to an event and get a goodie bag. Most of the time it contains makeup which I cannot use. I got a heap of Garnier products from the Kidspot party last weekend and I'm giving these to you!!

I've got a friend who manages the House stores and she's seen my love of cooking. House has kindly donated this prize pack to give away - it contains an Alex Liddy dip and server, an Alex Liddy tree serving platter, three Alex Liddy star bowls and a Baccarat salad spinner. I'm throwing in some food magazines so you can get cooking straight away!

Last week I went to the Etsy night market and grabbed some Christmas presents. I fell in love with the glittery pineapples from Blossom and Cat - buying a brooch for me and another little treat for a gift.

Helen from Blossom and Cat has put together a lovely pack for a winner.

My friend Sian has just started the Jewel Collective in November. She sent me a lovely bracelet from her boutique a few weeks ago - it features rose good stars - I love it! The packaging was also to die for. Sian is giving away some earrings to one lucky reader.

The earrings are from the Andromeda collection and are made from pink sapphires and rose gold vermeil (rose gold plated sterling silver). The RRP is $125.

I met Deb through the Blog With Pip course and found out about her amazing crafting abilities on Instagram. I bought a fruit salad brooch which makes people smile when I wear it. Deb has made this cute banner for the giveaway - it's worth $45.

I met Camille in 2010 because we both used to write for the same website and we're both bloggers. She's become one of my best friends and I'm so pleased to announce she will be my chief bridesmaid when I marry.

Summer Land is a blogger and author of the very not so serious memoir, Summerlandish: Do As I Say, Not As I Did. Her writing has appeared in Elle Australia, Women's Health, Cosmo Aus & UK & Mamamia. She's giving away three signed books. She dresses like her name!

I met Summer Land at the Melbourne Writers Festival this year. We were on a panel together. We bonded in the green room of the Toff In Town, counting the number of Dick and Balls on the walls. We never drew our own there. I read her book on the plane and laughed out loud.

I came to know Nerea through her mum, who worked with me. Nerea is a silversmith - creating beautiful jewellery for her store - Rulitos.

She's giving away away a necklace, designed especially for this blog birthday.

Nerea says:

"I have created a pendant to celebrate your blog's 5th birthday. It's an eco friendly piece that was created by melting little pieces of recycled .925 sterling silver then rolling the piece down over and over into a thin sheet which I then sawed the design out of. Due to the process, it's a bit rustic... 'imperfect' even... but I believe there's more charm and beauty in imperfection.

The pattern I printed was inspired by the 5 years of your blog, I think of them as dandelions or candles, something to make a wish upon :)."

I found out about Willow and Lotus and their jewellery store through superstar blogger Faux Fuchsia. We met over three years ago and have been friends ever since.

Red Phoenix Emporium are giving away two vouchers - one $50 and one $20 voucher. They've got plenty of items that are under $50 including tassel earrings, bags, scarves, bag tassels, bracelets and homewares.

So, those are the prizes up for grabs. Please stop by their social media sites to say hello, or buy something from them if you want to. Enjoy! And thank you again!

How to enter:

You can enter via this form. Tell me what you've enjoyed most about my blog, and what prize you'd like to win.

Entries are open from 7.00 am 8 December AEDST to 5.00 pm 16 December AEDST. Winners will be notified by email around 20 December. I cannot guarantee you will receive your prize by Christmas day.

Each winner wins one prize pack only.

International readers can enter.

Your personal details including email and mailing address will not be passed onto any third party unless you are the winner. I will contact you via email to confirm you've won and then pass on your details to the prize provider only.

Your email address will be placed into my email address book and used when I develop my newsletter. For now, I have no idea. I promise I won't spam you.

If you want to brunch with me, you have to be in Melbourne or be able to get yourself to Melbourne. I can pay for the brunch but not your travel costs sorry.

If you want to enter the St Frock completion, they have asked you sign up to the Frock Club on their website. Let me know in a comment on on the form that you've done so.

If you win the Red Phoenix Emporium prize, you'll have to sign up to their website to use the voucher.

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Copyright + disclaimer

The material on Tune into Radio Carly is copyright.The writing in this blog is by Carly Findlay unless otherwise stated.Most photos in this blog are by Carly Findlay unless otherwise stated.Please do not reproduce without permission from Carly Findlay.

This blog represents my personal opinions and experiences. It does not reflect those of my employers'.The information I provide about ichthyosis is mostly based on personal experiences. Please seek medical advice or counseling before trying any new treatments I've written about.